Living Through Severe Ulcerative Colitis

About a year after moving to Portland,Oregon, I started going diarrhea 30-50 times a day while working as a mover. There was so much blood in every stool I passed, well I ignored this for about 2 years and just loaded up on anti diarrhea pills I bought at the grocery stores.

I now am confined to a bed but can’t lay flat or on either side, I barely sleep and when I do I get soaked in sweat even in winter like rite now with the windows open and heaters off.

Some interests of mine:

Crossfit, motocross, powerlifting,mma, swimming.

Symptoms:

Nonstop bloody diarhea, horrible abdominal pain, night sweats and insomnia, cant lay on eitherside without pain and shitting myself cant lay on back have to lay on stomach with a slight twist, never get more than a hour of sleep without being interupted with having to jet to the bathroom ,sometimes i dont make it and diarrhea, myself on the way to bathroom (which is 10 feet away from my bed). Headaches and diarhea 24/7 i go about 30-100 times a day sometimes i just stay on my toilet for hours cuz i cant stand up and wipe without having to go immediately again.

Living Through Severe Ulcerative Colitis

Has anybody else got the disease to this severe of an extent? How do you live life? I got denied unemployment cuz they know about my diseases and dissabillity hasnt accepted my claims. I almost don’t know if I’m gonna be able to pay rent. I can’t work and can’t get any help from any government assistance, not even foodstamps, I got denied on that too.

Life is looking hopeless for me. I’m using the bathroom about every 5-10 minutes, sometimes I can’t control it and diarrhea sprays out by itself as I’m trying to run to the bathroom. I sleep maybe 25 minutes a day and that’s interupted by bathroom visits and in my 25 minute naps i get soaked in sweat and I’m in Portland, Oregon. It’s winter, I keep all the windows open and heaters off and still am so freaking hot and sweating. I lose about a cup of blood or more with each diarhea, im 130 lbs and in may i was over 230 of pure muscle with low bodyfat. At ohsu the nurses said during my month stay that they have never seen that much blood in stool, i was filling up to rim those white toilet hats with blood when i pooped, we are talkin 30 -70 times a day, they still cant see how im alive with all the blood losss daily, when i eat food it comes out undigested in my bloody diarhea. I feel like i would rather die than live with these diseases, having pancreatitis, pancolitis uc (severe), and severe Crohn’s and stomach ulcers on top of everything. It’s just so miserable i know they can remove my colon entirely but my stomach and pancreas and small intestines are severely damaged can they even remove that many organs? Seems extensive to have no digestive system don’t you think? Anyways Im screwed in this life at 25 years old and i truly believe its an environment trigger after moving here to portland oregon.

About Sean G

About a year after moving to portland,oregon, i started going diarrhea 30-50 times a day while working as a mover, there was so much blood in every stool i passed, well i ignored this for about 2 years and just loaded up on anti diarrhea pills I bought at the grocery stores, I ended up getting toxic mega colon, severe pancolitis ulcerative colitis and pancreatitis and Crohn's.

Give them a read. As for surgery, well, you probably have alot of questions about that since yes, it is a big deal as well. But rest assured, there are many successful stories of surgery on this site that you can become educated about, heck, I even published a brand new one a few moments ago on this link that somebody sent over:

Lastly, I want you to know that there was a time back in 2008 and 2009 when I was living through severe ulcerative colitis symptoms. It seemed as though it would never end, bloody bathroom trips after bloody bathroom trips over and over again, day in and day out.

I had no clue where to turn, as the medications I tried were failing me. In the end, major changes to my diet have seemed to be the best solution, and I continue on with that today nearly 7 years later.

You too will find a solution that works best for you, but I think for now, you need to make sure a good qualified Gastro doctor is looking over you, especially with severe out of control symptoms.

That’s so horrible. I didn’t work for two years and I had a two-year-old at the time. All her toys were around me in the bathrooms. I was exhausted. I did eventually go to the doctor and I tried herbal supplements. It took a very long time to figure out what was right for me. I took the medication they suggested at first. Prednisone is usually what I take to get over the initial horror of the symptoms and then I get a medication to maintain. I had many complications from the maintenance medications as I was allergic to them all. I am currently trying to maintain on herbal supplements. I think every colitis experience is different. Every attack has been different for me and I also think it is different for every person. That’s horrible your situation. It is very difficult psychologically. Amidst all the fighting to keep a good attitude and struggling to survive I had one really good person say to me, “Do you not want to get better?” People have a very difficult time understanding this. I think it helped me to have more compassion on other people who are ill. I hope you find a way to fight it soon. Hang in there. I wish there was something I could do to help.

You are in a terrible place but yes Adam is right you need practical help. I ignored my symptoms for ages when first diagnosed in 2011 and lost nearly all my blood it is easy to be in denyal. Please hang in there and get the most practical help you can. Can you get a social worker or anyone who can help you fight the decision for disability to be knocked back? I’m from Australia so I’m not sure of your system there. It can get better when things feel so bleak don’t forget that.

Are you on any medications?? This seems quite severe….so severe, that it kinda sounds like you should be in the hospital, NOT at home!…especially if you’re losing that much blood & nutrients. I have moderate pancolitis & was diagnosed in 2014 after 2 years of on and off symptoms (i assumed it was IBS…but when i started seeing blood and started going more than 10x a day i knew something was wrong). I have now been in remission 2 years…..& although my GI put me on Apriso to help maintain remission, i really think the herbal supplememts i read about, & have been taking, is at least 70% of the reason why i have been doing so well. I take 2 Florastor probiotics per day, 2-3 turmeric capsules per day, 4 marshmallow root capsules per day, & 2 boswellia tablets per day. These supplements only cost me a mere $40-$50 per month & i believe have helped tremendously. I also have my CT medical marijuana card. I used marijuana during my last flare in 2014 (before medical MJ was legal in CT), & i found smoking it helped my pain & anxiety quite a bit….so when it became medically legal, i got my card immediately. The dispensaries sell things that i believe will help whenever i do flare again…vape cartridges, edibles, capsules, etc, are all quite helpful. I’d highly suggest that as well. As for disability….dont get too frustrated, you have to keep trying and eventually they’ll sometimes approve you…especially with a doctors letter. I wish you luck. Hang in there.

Sean,
We are currently driving across the state of Wisconsin and I’m typing on my phone… Your symptoms match the symptoms I had exactly when I had severe C Diff. C Diff is a bacterial infection in the large intestine… It is a dangerous infection and requires antibiotics. Please let us know if you’ve been tested for this… And tested recently and more than once. The probiotic Sacchroymces Boulardii will cut down on the number of trips you take to the bathroom. You can find it in pharmacies under the brand name Florastor. I took 4 pills a day… 2 in the morning and 2 in the evening.

I am so sorry that your disease is that severe. I am the main caregiver for my 20 year old autistic son who also has severe uc. He is hospitalized when he symptoms are not even as bad as you are describing. It takes several days of IV medications to get his symptoms under control and he usually ends up losing a lot of weight. He once dropped down to 111 pounds which looked truly horrifying on his 6 foot frame. You are most certainly not alone in your misery. I wish I could tell you that there is one sure fire cure. Some find relief in drastic dietary changes, others medication and still others surgery. I’m sure you find yourself not trying to get through the day but trying to get through the minute. I will be praying that you not only find a doctor who can get your symptoms under control but also that you will have friends and family to support you while you are at this low point. Keep looking forward, there is hope, you can achieve a more normal life again. Just keep doing the next thing.

Dear Sean,
It sounds that you have infection from C-diff, or MAP.
But, don’t loose hope. Please call dr. Chamberlin, he treats cases like yours. He will return your phonemail and direct you on the next step.Meanwhile do C-diff test couple of times.
Good luck. It will pass and you will be ok enjoying your life.

Sean, so sorry to hear of your situation. I hope you are getting enough fluids in you as dehydration can cause headaches, as well as other bodily function problems.
Are you able to do any type of work from home? That could help you financially.
I think when it gets so bad, you don’t always think straight. Sometimes you don’t want to fight, but it does get better and you have to remember that there’s light at the end of this. You’re just in a bad spot right now. Just the other night I had a blockage and thought I was going to die. I didn’t care. I just wanted the pain to stop. But I am in a better state of mind today. Today I am a fighter. I can’t give up. I have too many things I want to do with my life yet.
Be a fighter. Go through the motions. Define the steps to get yourself better. Make the appointments, get the tests and medication, get yourself on a clean diet. You’ve got to get your gut calmed down. Get your stress lowered–any way you can. Get enough sleep. Read, read, read…understand your disease. And stay in touch with this site for truly great support. In my opinion, only those that have a gut problem really understand it. Other people can support you, but people who relate to you best are those of us who are going through or have gone through, what you are suffering with now. Trust me, we feel your pain…don’t feel alone. You will enjoy life again…promise…

Recent Reviews

My Biography

Feeling Crappy to Feeling Happy eBooks

Jan 16, 2018byPrinolan Govender

City/country:: South Africa

I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well but didn't take to much notice to it until the blood showed up. I was diagnosed in October 2016 and at the time my GI told me it had nothing to do with my diet, so I lived my life the same way I always did. I've been trying many different meds without little or no results. After my 29th birthday in June 2017 I started feeling more sick and the weight loss had started, I've always been a skinny guy and ever since I lost quiet a bit of weight which has been something that just makes me feel more uncomfortable. I consulted a Homeopath in October 2017 and she started me on the Paleo diet, while researching that I came across your site and the SCD diet which I started in December 2017. I didn't do any of the diets a 100%, but I did start seeing results. I went a bit off the rails during the festive season while traveling but I'm easing into the SCD diet again and plan on going 100% this weekend. UC has caused a lot of stress for me but I've come to accept it and look at it in a positive way. My goal is to eat healthy, put some weight back on and start living a normal life again. I haven't let UC stop me from living my life although it has limited me, but thats all going to change! Thank you for sharing your story and being an inspiration to all of us.

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Feeling lucky

Feeling Crappy to Feeling Happy eBooks

Dec 10, 2017byKathryn-Jane

City/country:: Vancouver Island, Canada

I found this to be a very funny, informative book. It made me realize how lucky I am, as well. I haven't suffered anything like the severity of symptoms Adam has experienced, for which I am grateful - but that's not to say I haven't known the usual UC misery at times! As a wordsmith and grammarian, though, I wish the book had been given a more thorough edit. Maybe in the next edition.

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Feeling crappy to happy

Feeling Crappy to Feeling Happy eBooks

Nov 21, 2017byLynn

City/country:: North Carolina

The book was so honest and forthcoming about UC symptoms. It was almost like reading my own story since this journey began for me 2 years ago (no remission yet). I was starting to feel pretty hopeless about this whole situation but Adam’s book gave me hope that I (we) can take control of UC. I have been following the SCD and eating what Adam ate while in a flare. I can tell a difference! Still sticking with my docs medical plan for now. But, I am hopeful that healing is coming and that diet is the key. Thank you Adam for continuing th share your journey!

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Thank you!

Feeling Crappy to Feeling Happy eBooks

Oct 06, 2017byJennifer

City/country:: Toronto, Canada

Thank you so much for writing your e-book. I'm glad I came across it. I learned a lot. I realized that I don't like my GI doctor and need to find another one. She hasn't helped me at all. As soon as I was diagnosed with a mild case of UC back in 2009 I knew that I had to visit my Naturopath. I was not interested in taking any medication. I was prescribed salofalk enemas and I tried a few but when you keep having to run to the bathroom it didn't make any sense to me. I was prescribed the pills as well. I sat down with my Naturopath and we went through the side affects. My symptoms were less than the side affects so I decided not to take it. It has been quite a journey and unlike Adam I knew it had a lot to do with food. I'm sorry you had to suffer so much Adam. I gave up pop and any carbonated drinks, deep fried foods and aspartame/splenda. This seemed to help. I now think I need to take things to the next level. I just came across FODMAP and what Adam suggests. I'm also looking into Keto or Paleo. My stress levels are less currently due to a less stressful job and I realized that has helped. I take supplements like probiotics, digestive enzymes, fish oil, etc. Thank you so much for sharing your story Adam. It makes me feel like I'm not alone in this.

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Bravo! We can all do it like Adam.

Feeling Crappy to Feeling Happy eBooks

Aug 29, 2017byBonnie

City/country:: Toronto/Canada

Thank you for what you have done for the UC community! No words can express my hope when I read your website.

The books are purchased for my 21-year-old son who has been diagnosed with ulcerative colitis 3 weeks ago. His case is mild to moderate and inflammation occurs on the whole colon. The GI doctor in Toronto here did not give us any hope of finding a cure.

Feeling Crappy to Feeling Happy is written in an intimate way to allow the readers to walk the brave journey with Adam.

After ready your book, it boosted our confidence of finding a cure through alternative means.

I have read through the recipes and circled the ones that are ok during active flare. There are not many of them. I am preparing meals based on the suggested recipes. I requested Adam to provide additional recipes if possible. He got back to me with a new website which has more recipes. It also has videos of the latest research studies on UC. https://www.nimbal.org/blog/recipes

Adam, thank you again for taking the time and effort to share your personal experience of conquering UC!

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Soooo thankful!

Feeling Crappy to Feeling Happy eBooks

Jul 29, 2017byDanyelle

City/country:: Sioux Falls, South Dakota

I read the book within a couple days and am so very thankful that I came across it! Adam's story helped me feel that I wasn't alone in this and being able to relate was comforting. I'd always been a healthy child growing up and so having this occur right at the beginning of this year has been a battle. Luckily for myself, it wasn't as bad as Adam's recovery. This book led me to the SCD and book "Breaking the Viscous Cycle" and diving into the reading and research I want and need to know. Along the way I also came across the book "Two Steps Forward, One Step Back". I plan on taking what I've learned and applying some diet/lifestyle changes to then become medication free!

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Not alone

Feeling Crappy to Feeling Happy eBooks

Jun 15, 2017byDeidre Dixon

City/country:: South Carolina/USA

I was only recently diagnosed with UC and had so many questions (and was so scared). This boy I was a godsend. Adam's sense of humor, directness about symptoms, suggestions, personal success with SCD and recipes gave me just what I needed to get my hope back. Highly recommended.

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4.75.0116116I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well Feeling Crappy to Feeling Happy eBooks

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